Oration for the Edinburgh Medal 2024: Mario Negri Institute

02 April 2024

Lord Provost, it is an honour to deliver this oration on behalf of the Mario Negri Research Institute Italy and its Director Prof Giuseppe Remuzzi. My thanks also go to Prof Wall, the audience, and staff who are making tonight possible. Prof Giuseppe, you have arrived on a dreich day, so I hope Edinburgh hospitality will warm the cockles of your heart.

We are living in the worst of times. The complicity of western governments and our economic dependence on the military–industrial complex that produces weapons of war for mass murder has been laid bare for the world to see. The ongoing genocide in Gaza is a public health tragedy unfolding in real time, documented by the victims themselves. There are parallels with the medical-industrial complex of the west where millions of people across the world are dying because of lack of access to safe and affordable essential medicines and health care. We are living in an era of unbridled corporate power and greed, and the vision of what science in the public interest should be is rapidly being lost. The tiny glimmer of hope lies in the philosophy of the Mario Negri Institute for Pharmacological Research.

What makes the Mario Negri institute so different and so special is its focus on “patients not patents and not profits’. Its creation in 1961 anticipated the need to protect the public interest against the rise in corporate power and commercial conflicts, which are so prevalent in medical research today.

Why, you may ask, are patents so problematic in health care and why is the institute’s mission so important?

A medical patent is an exclusive legal right, granted by government, which protects the inventor of the medical product, process, or technology against market competition. A patent prevents the patented invention from being produced, sold, or used by competitors.

Of all the evils to beset modern medicine, patents are perhaps the greatest. Patents have been ruthlessly exploited by industry and western governments to drive up prices, create profits and make medicine unaffordable to billions of people. A huge body of research shows how patent protection distorts medical research and public health priorities, compromises the good conduct of clinical trials, stifles innovation, and creates enormous waste. Some of you will be surprised to learn that many if not most of the newest and costliest drugs launched into the market over the last four decades are both of unproven effectiveness and little value or benefit compared to older drugs. Industry manipulates the patent in a process known as evergreening to keep profits high. It protects its patents from expiry by making tiny changes to the original medicine, which are claimed to be superior to the original, and by withdrawing the older products as the original patent expires and generics cannot enter. Insulin is a good example of this. For over 90 years there was no generic version of insulin and insulin remained on patent. It is still to this day unaffordable to the millions who need it.

Insulin, along with penicillin, are two of the great discoveries of the last century. These two medicines have saved countless millions of lives. The Oxford scientists who discovered penicillin, Fleming (London), and Florey, Chain, and Heatley (Oxford) never patented their discovery. Similarly for insulin, Frederick Banting discovered insulin in 1923 and refused to put his name on the patent. He declared, “insulin does not belong to me, it belongs to the world”. His co-investigators James Collip and Charles Best also felt it was unethical to profit from discovery that would save lives. They sold the insulin patent to the University of Toronto for $1. They wanted everyone who needed medicine to be able to have it.

Industry and western governments however had other ideas, which is why insulin remained on patent for over 90 years until as recently as 2015.

Like sales of military weapons, pharma sales are vitally important to the economies of many western countries. The Danish company Novo Nordisk, which makes insulin (and now the weight loss drug), has a market valuation of $500bn, a value larger than the GDP of Denmark where it is based. Industry, not government, calls the shots.

Today the profit-seeking behaviour and motives of the medical-industrial complex extends to our universities. Our universities have increasingly become commercial operations where patents and spin-out companies to generate profits from patient care are now seen as a laudable enterprise. Unlike the great scientists who discovered penicillin and insulin our academics, our scientists, and our doctors are part of the complex labyrinth of commercial operations owning IP, with shares in spin out companies and joint ventures. Forbes magazine regularly publishes data on the scientists who have become pharma millionaires and billionaires. The doctors and scientists that developed covid vaccines at Oxford University, all of whom are employed through taxpayer funds, have now become covid vaccine millionaires. In the US, the scientists who worked in Harvard University and MIT along with the chief medical officers of Pfizer and Moderna, have became covid vaccine billionaires. The levels of wealth being generated from profiting from patents and ill health is frankly obscene.

This model of research and profit seeking also results in the neglect of research into diseases that are responsible for millions of deaths in low and middle income countries. The vaccine for Ebola was unavailable was because it sat undeveloped for 10 years due to its perceived unprofitability, with catastrophic consequences. There are many more such examples. The medical research model and its funding are broken.

The establishment of the Mario Negri Research institute in 1961 under the leadership of Silvio Garrattini anticipated all of what I am describing. Its intention from the outset was to harness the private sector and put it to public use and above all to end the commercial conflicts and competition which leads to so much research waste. Its mission is clearly set out in its Code of Values and Ethics. The importance of its principles cannot be overstated. The institute refuses to pursue patents on the drugs and methods it develops. It is committed to transparency and sharing its research data with other scientists and making it open source. It is independent of government and so too is its funding model. It does not outsource control of its trials and research to pharmaceutical companies. It is committed to public policies that will promote research into unmet clinical need. It will not drop a potential new medicine development because the profit potential is too low. It is committed to promoting the public scientific understanding of science. Public trust in and support for the institute is strong. Living and working our values – is not just a glib slogan, as it is in most UK universities. The history of the Mario Negri Research Institute and some of its many remarkable achievements is recorded in the book Good pharma. The institute is indeed the antidote to Bad Pharma. It strives to undertake ethical research without commercial distortions.

The City of Edinburgh Council is to be congratulated for awarding the Edinburgh Medal to this important and unique institute and at this time. The values of Mario Negri are almost entirely missing from our universities and industry where the research culture is blighted by commercial conflicts, competition, and profit seeking behaviours. It has been described as “a bright light on a remarkable approach to conducting pharmacological research in the public interest … The Institute’s research is ‘motivated by a social mission centred on compassion for and responsibility to the vulnerable, sick and suffering’”. It is an example that researchers in the UK and Scotland would do well to follow.